ALS: Bed of Grief

ALS, Amyotrophic Lateral Sclerosis, is a terminal disease. As with any diagnosis of a terminal disease anticipatory grief begins at the get go. Sometimes the grief is huge, like a king size, unmade, bed with the sheets, blankets, and pillows all piled high. Sometimes the grief is hidden, like under a smoothly made bed that when the covers are pulled back there is just a little wrinkle to the sheets. All the time there is grief, whether it is buried deep inside of us like the material inside a mattress or hanging out for all to see like a messy bed.


Soon, this week or maybe the next, a hospital bed will be delivered for Tom,my guy with ALS. It is a bed that will, hopefully, accommodate his increasing dependence on care, particularly at night. A recent serious infection that went septic accelerated the need for a bed that will assist in preventing pressure sores. It was a hard-fought battle with the VA to get the bed that would be best for a person living with ALS. It is a bed in which a number of veterans have received from various VA’s across the country. It is a battle I lost. Is it the second-best choice of a bed? I do not know. Maybe it will be better than the best bed I know of, requested, and was denied or maybe it will be the worst choice possible. This will reveal itself soon.

In many ways, this moment, right now, if I could, I would hold onto forever. I was angry with myself for giving up the fight for the bed we requested. I could have appealed and that would have potentially delayed the delivery even more so than it is. The bed we wanted has a two-week delivery window. The bed he is getting is an eight to nine weeks process from beginning to end. If I lost the appeal maybe it would late May or June before he got what he so desperately needed. I got myself pretty worked up over haggling with the VA over the hospital bed. I even allowed a friend to get under my skin, and into my feels about it, that to this day I have not spoken with this person. Tom asked me not to appeal. My health was suffering. Little did I know sorrow had a choke hold on me. When the hospital bed arrives sharing a bed together for nearly thirty-nine years departs. Anticipatory grief is a tricky bitch.